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Living with Thalassemia

Living with Thalassemia: Resources & Support
▶ Psychosocial
▶ Child Life
▶ Social Services
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Resources and Support

Social Services

crazy hats Social services that meet the needs of the patients in a culturally sensitive way are critical for patients with a chronic disease that requires an inordinate amount of resources.

Social services should:

Social Services at CHRCO includes the following:

  1. Emotional/Mental Health Support:
    • MSW Role: grief/crisis counseling and assessment/referrals for mental health resources.
    • Resources: ACCESS (Mental Health Hotline in Alameda County) 1-800-491-9099; contact MSW for resources outside of Alameda County.
  2. Access To Care Support:
    • MSW Role: referrals to hospital-based and community-based resources for lodging and transportation to ensure that our patients will have access to medical care at our program.
    • Resources:
      1. Transportation
        • Regional Transit Connection Discount Card Program (low-cost public transit in Bay Area) www.transit.511.org/disabled/RTDC.aspx.
        • Paratransit (door-to-door service for individuals with physical disabilities in Alameda and Contra Costa Counties): www.eastbayparatransit.org.
        • Southwest Airlines Green Pass Ticket Program (free airline tickets may be available for patients who live outside of the San Francisco Bay Area; contact MSW for details).
        • Taxi vouchers and gas money (provided by CHRCO Social Services Dept as needed: contact MSW for details).
      2. Lodging
        • Family House (CHRCO lodging program for patients who live outside the Bay Area; includes private bedrooms and communal bathrooms/kitchen; contact MSW for details).
        • Hotel Discount Programs (hospital discounts for local hotels available; contact MSW for details).
        • Section 8 Housing (public housing program for low-income individuals and families; contact MSW for details).
  3. Financial/Insurance Programs:
    • MSW Role: referrals and advocacy for state medical insurance programs and financial assistance for low-income individuals.
    • Resources:
      1. Health Insurance
      2. Disability Benefits
      3. Social Assistance
        • cash aid, food stamps in Alameda County: www.alamedasocialservices.org.Contact MSW for details on the application process within and beyond Alameda County.
      4. Employment
        • Department of Vocational Rehabilitation (state employment and life skills training program for individuals with disabilities): www.rehab.cahwnet.gov.
      5. Charitable Organizations
        • Make A Wish Foundation (program for children under age 18 with transfusion-dependent, severe forms of Thalassemia and other life-threatening conditions): www.wish.org.
        • The Wish Connection (program for children under age 18 with Thalassemia and other lifethreatening or chronic conditions): thewishconnection.org.
        • Painted Turtle Camp (annual summer camp in Southern California for children ages 16 and under with transfusion-dependent Thalassemia and other chronic conditions) www.thepaintedturtle.org.
  4. Advocacy:
    • MSW Role: to advocate for the educational and safety rights of our patients and families.
    • Resources:
      1. Educational
        • 504 Plan and IEP (for school-age children who require special accommodations for their academic curriculum due to health and other conditions): www.ed-center.com/504.Contact MSW for details on how to initiate these programs in your local community
      2. Legal
        • East Bay Community Law Center (legal aid center in Alameda County for low-income families): www.ebclc.org.
      3. Domestic Violence
        • CHRCO Center For Child Protection (counseling for children and families who are victims of domestic violence).
        • Alameda County Family Justice Center (counseling, legal assistance, and law enforcement resources for domestic violence victims): www.acfjc.org.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3651   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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